Like many other women, women with disabilities in Bandung, Indonesia, have
the desire to leave the home and to work - in other words, to live independently.
Independent living for women with disabilities is about "greater self-determination"
and encompasses everything in their whole lives (Priestley, 2001, p. 10). Self-determined
women with disabilities decide upon and strive for what they want to achieve
without allowing others to interfere with the goals they have set for themselves.

This paper begins to describe the how women with physical disabilities self-determine
and achieve independent living in Indonesia, a developing country. As an Indonesian
woman with a mobility disability, I am more knowledgeable about lives of women
with physical disabilities there. Two other women, Sari and Tini (pseudonyms),
consented to participate in a research project of which this is a part. My work
in Münster, Germany, during July through October 2001 has helped me to
see that while some of the general problems are the same, the specific nature
and solutions differ.

The roles of society and government towards people with disabilities
Westbrook et al. (1993, p. 621, citing Triandis, 1989) uses individualism and
collectivism to explain the cultural differences in social behavior. In collectivist
cultures, such as Indonesia's, group goals dominate individual behavior, emphasizing
duty, cooperation, and sacrifice for the group. Social control is determined
more by shame in collectivist societies, and in individualistic societies by
guilt.

In individualistic cultures, such as Germany's, personal goals take priority
over group goals. Individualistic societies value autonomy, self-reliance, and
independence. In Germany, the state is obliged to make life easier for people
with disabilities to the greatest extent possible with the state or city council
providing financial support for human assistance and assistive devices. Yet
at the same time, the individualistic society of Germany requires people to
be personally responsible for their own decisions and actions. In Germany legislation
designed to promote the equal opportunity and equal treatment of people with
disabilities was passed in 2002, and may be contributing to a growing view of
people with disabilities as persons with special needs, no different from that
of others with limited mobility, such as children, pregnant women, elderly people,
and people carrying luggage. Attitudes towards people with disabilities in developed
countries are becoming less negative (Westbrook et al., 1993, p. 615). It is
not surprising to see people using wheelchairs in the streets of Münster,
many of them moving without the assistance of others.

In many developing nations, discrimination against people with disabilities
remains relatively unchanged (Westbrook et al., 1993, p. 615). In Indonesia,
while the Department of Social Welfare (1998) has formulated social welfare
regulations on behalf of people with disabilities, it has not been effective.
The resolution of social problems here is dependent on society more than the
state. In collective cultures, social support can be expected for group members
(Westbrook et al., 1993, p. 621). Rather than seek aid from a government agency,
a poor and sick person will receive funds from a group, usually families and
friends, who "voluntarily" collect money. Group members will consider this kind
of help as their duty, while running the risk of decreasing their own personal
savings.

Women with disabilities, with a focus on Southeast Asia, are preoccupied with
coping and survival (Parnwell and Turner, 1998, p. 148). In developing countries,
women with disabilities are considered inferior to other women (UN ESCAP, 1995,
p. 1) and they confront problems of isolation and marginalization. Lack of self-esteem
hinders efforts to improve their situation. Since birth they are either neglected
or overprotected (UN ESCAP, 1995, p. 1 & 5), but in some large cities in
Indonesia, women are becoming more self-determined.

It is important to note that Indonesia's society is predominantly patriarchal,
where the social structures are hierarchical and where women have low status.
Women with disabilities are perceived as useless and therefore are excluded
from important decision-making and participation. Women with disabilities are
expected to accept what has been decided for them by others.

Women with disabilities have to struggle to make independent living in Indonesia
a reality. They are not a priority for government aid, and so cannot rely on
the government to meet their needs. When they are in urgent need, friends and
neighbors will help and support to the extent that they infringe on one's private
life. Women with disabilities can easily approach strangers for immediate help
because unemployed people or people who are working informally are everywhere.

Independent living and mobility

Analyses of mobility must consider the ability of individuals to negotiate
the physical space of the city independently as well as the barriers that may
prevent it (Butler & Bowlby, 1997, p. 427). The mobility related-experiences
of travelers and residents of Bandung and in Münster offer a striking contrast.

Bandung, home to approximately 2.5 million people, is the regional capital
of the province of West Java and lies 180 km southeast of Jakarta, which is
the capital of Indonesia. Bandung is a university city that attracts many young
people from all over Indonesia. It is a hilly city, causing cyclists, drivers
of pedicab tricycles, and users of manually operated wheelchairs to work intensely
when going uphill. Heavy traffic crowds the roads every day. Indonesia's prolonged
economic crisis allows petty traders and street hawkers to use the sidewalks
as their shop space. Due to lack of safe and convenient sidewalks, pedestrians
are compelled to walk along the edge of roads. People with disabilities in Bandung
encountered inaccessible facilities constantly to the extent that in 1998, an
expatriate from the Netherlands queried: "Are there handicapped people in Bandung?
I've been here for over two years but have never seen them on the roads." People
with physical disabilities are not able to take part in many events and opportunities
in the city because of economic and structural barriers in the built environment,
although the government is obliged to remove barriers to and in public buildings.
Despite official guidelines to build accessible environments, it is possible
for builders to ignore the requirement for physical access in the designs without
sanctions. Few people with mobility disabilities can afford tickets to the few
splendid movie theaters that they are able to enter.

Münster lies in the northwestern part of Germany, with a population of
about 281,000. Münster is also a university-city. Much of Münster
is flat, an advantage for city planning and for cycling and for people who use
wheelchairs. Facilities for cyclists are among the main priorities of the city
council. Wide sidewalks with special passages are built to separate cyclists
from pedestrians, but many bicycles occupy half the width, which impedes the
mobility of wheelchair users. The KOMM project (Communication and Orientation
Services for Disabled People in Münster) has contributed to the creation
of a barrier-free city. This Internet program is about accessibility of open
public spaces, buildings, and all types of institutions for all citizens, but
in particular, people with physical and mental disabilities. Such assistive
technology aids people with disabilities in dealing with their daily activities
of planning their mobility in public facilities (Neumann and Uhlenkueken, 2001,
p. 370).

In developed countries, mobility and autonomy are important needs related to
employment and adulthood (Turmusani, 2001, p. 199). Mobility signifies "control
over one's life in a modernizing world," notably, in finding meaningful employment
outside the home (ibid; Gleeson, 1999, p. 38), and therefore is crucial for
independent living. Paid work may determine one's social identity in developing
countries where economic and social inequalities are more obvious (Turmusani,
2001). For people with disabilities, this relates to "the level of inclusion
into society" (Turmusani, 2001, p. 199).

Mobility is often overlooked in developing countries (Turmusani, 2001, p. 199,
citing Coleridge, 1993) because there are more urgent needs: housing, education,
income, and health. Women with disabilities in developed countries have claimed
resources to maximize individual choice that enables them to live independently,
but for women with disabilities in developing countries survival exceeds issues
of equality in developing countries (Priestley, 2001, p. 10).

The independent lives of three women with physical disabilities in Bandung

This section is a brief description of three women with physical disabilities
in Bandung and how they experience independent living. All three are self-determined
to leave home and to be self-supporting.

Sari runs a dressmaking business in her home. She uses a wheelchair for her
mobility; she does not have a car. She is not able to use the public vans and
buses, because there is no space for a wheelchair and because of the steps into
the public transport vehicles. Many drivers of public transport do not want
to take her in their vehicles. She wheels her manual wheelchair on the roads
unaccompanied when she goes shopping or to meet her friends. Sari finds it is
stressful and a strain to get to shops and other places because she has to make
a great effort to thread her way through congested roads. This self-determined
woman has no choice but to take the risk of getting injured on the roads, as
well as having to breathe fuel emissions from motor vehicles. She argues, "If
the pushcarts can use the road, why can't I. It's the government's fault not
to build wider sidewalks and making them free from those [street] hawkers".
Sari has begun to have pains in her upper arms and shoulder due to wheeling
the wheelchair, although she tries to disregard the pain.

Sari is able to travel alone on the trains, despite the steps to get on and
off the train and the narrow compartments. She just has to ask the porter to
carry her wheelchair and luggage and to help her to get on the train. As her
financial resources are limited, she must bargain for the service.

Her parents live in another city and they rent house for her in Bandung, where
she lives with relatives. Her highest formal education is high school with two
years of college. Her dressmaking business and the social activities she is
committed to are far more meaningful than lamenting the inaccessible city environment.
She has learned how to change a situation that is not accessible and find ways
to adjust without getting discouraged (A World Awaits You, 2002, p. 13).

Tini uses crutches or a wheelchair. When Tini was a student, people would help
her to go up the steps into the building where the classes were held. Now, as
an instructor at this same university, she has chosen get around on campus without
assistance. To avoid the steps at the entrance gate, she sits on the concrete
fence and turns herself towards the building's entrance. This used to embarrass
her, but her determination to get herself into the building has helped to her
to ignore this feeling.

For travel outside her home, she depends largely on a chauffeur, a domestic
maid, family, and friends. She uses her parents' car to travel to and from the
workplace, shops, church, bank, and movie theaters. Her parents live in another
city and they have rented a house for her and her niece. Her parents do not
allow her to live with only a domestic helper; a relative must live with her,
too. She is surrounded by people who will not leave her, she believes, and questions
why she should take the trouble to walk or wheel on the roads by herself? She
says that the bumpy and narrow sidewalks and steps were too troublesome to deal
with. If she uses public transport, she requires someone to accompany her because
she is not able to get on the vehicle by herself. She fervently desires for
easily accessed public facilities, such as vehicles, sidewalks, and steps, so
that she can move about the city independently.

I have walking difficulties, but I am able to walk without walking aids. I
work for a government organization and have a Ph.D. I live with my mother. I
use my parents' car and chauffeur, but for personal freedom, I prefer to travel
by public transport, and do so regularly, even if it is difficult to get on
and off the vehicle. For me, the city public transport is a necessity. The public
vans stop at any place along the routes upon the passengers' request and this
shortens the distance to walk. This transport system prevents me from getting
too exhausted. When I am preparing to board the office bus, some colleagues
suddenly leave because they do not know how to help me into the vehicle, and
they fear that they will hurt me by pulling on my impaired arm.

My travel experience to Münster has given me insight into other types
of mobility-assistance. An electric wheelchair or a scooter was available for
fast mobility in both of the international airports in Jakarta, Indonesia and
Frankfurt, Germany.

At the Jakarta airport, my brother loaded my luggage into the trolley, the
airport door opened and closed automatically, and the check-in counter was near
the entrance of the airport, so getting into the airport and checked in was
not difficult. I had come to the airport early and had enough time to walk at
my own pace with my loaded trolley, but a porter interfered. In Indonesia porters
look for anyone who can pay for their help, although sometimes this is annoying
when they force people to use their services. A porter insisted on pushing my
trolley, perhaps thinking that my physical disability meant that I had to have
his help. After some thinking I decided that I might, and I finally gave in
to his incessant offer, although I had to spend money that I had not planned
to spend on such assistance.

There was no special assistance during the domestic flight from Frankfurt to
Münster or when I landed. The airport in Münster was smaller than
the one in Frankfurt, so the distance to the luggage conveyor belt was shorter,
but I could not lift my luggage into the trolley and had to ask for help, which
was awkward because I do not speak German. I had to rely on my feelings to determine
which person I could ask for help. There were no porters for hire unlike the
situation in the Jakarta airport.

In Münster I could carry many purchases because the entrances and exits
of the city buses were level with the sidewalks. Because most public buildings
and open spaces were free of barriers, I could walk around without much difficulty
and I was able to visit interesting places.

Discussion and Conclusion

Women with physical disabilities can obtain ongoing or occasional assistance
by strangers, friends and neighbors, but not always. In Bandung, women with
disabilities from the middle- and upper classes are able to be independent because
they can afford to hire maids and chauffeurs. Tini hires a domestic helper for
the household chores. I can use a chauffeur. The recent economic crisis with
high rates of unemployment has provided a larger pool of employees for women
with physical disabilities who need assistance in daily living and mobility.

In Indonesia, a woman with a disability has to determine for herself that she
will lead an independent life. Tini took great pains to go up and down the two
sets of staircases to give lectures, and she was unlikely to find another job
since there are few chances for women with disabilities to earn a regular income.
Women with disabilities have to accept the trouble they face, if they want to
keep the job. When I told Lea, a woman with a physical disability in Münster
about this, she had the following reaction: "This is amazing! In Germany we
refuse to do the job because of the stairs. We will make a protest".

In both cultures the women have to be self-determined, but they are self-determined
in different ways. The difference is that in Indonesia the women are compelled
to accept the physical barriers and cope with the situation as it is, in Germany
the state is obliged to change the situation by removing the barriers for example.
There are laws, professionals, and technology that provide assistance to people
with disabilities.

This paper begins to look at the types of assistance -- paid and unpaid, human
and technological, legislated, enforceable or not -- that exists for people
with disabilities in developing countries, and how necessary all sorts of assistance
are to women who want to live independently. Mobility is a major aspect of independent
living. In Bandung now more women with visible disabilities appear in public
spaces than about two decades ago. To be able to move around conveniently and
have safe access to the built environment is central for women who want to achieve
independent living. However, first and foremost, people with disabilities must
be their own redeemer (Tandon, 1995). Others cannot help them if they do not
change internally and do not begin to take real action. Women with disabilities
who assert their self-determined lifestyles and who are in this process have
learned to empower themselves (Women in Action, 2001, p.1). Women with disabilities
living in a society ignorant of disability issues are finally beginning to speak
up.

Acknowledgements

This paper is based on research sponsored by the German Academic Exchange Service
(DAAD), who supported me as a research visitor to the University of Münster
in Germany. I thank Peter Neumann of the University of Münster who was
my host researcher. My gratitude is also for the women with disabilities whom
I interviewed who have generously given their time and opinions.

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